Fourteen weeks ago Kathy Evans gave birth to her third child, a beautiful daughter. Nine hours later she was given the news everyone dreads - her baby has Down Syndrome.

Let me start by saying that Conor and I are good parents. Everyone says so.
When our third daughter was born with Down Syndrome, the same sentiment echoed
through the congratulation cards; it couldn’t have happened to a nicer family.

We appreciated the comments and the spirit in which they were made. They were
attempts to be consoling by people who were lost for words, not knowing whether
to offer congratulations, or commiserations. Still, sifting through the cards
in the aftermath of our crisis, Conor remarked dryly: "Next time I’m coming
back as a Complete Bastard."

Not that either of us believes in an afterlife. That’s our problem, Conor and
I, we’re devout atheists. At this moment of reckoning in our life, when people
turn to their faith for support, we couldn’t even draw comfort that Caoimhe
was the baby that God had sent us or that this was our Fate; there was no spiritual
buffer. No, we had been starkly confronted by a random act of the universe,
Caoimhe McCooey was the one in seven hundredth baby born with Down Syndrome,
and suddenly our lives had changed forever.

It was, we reflected later, as if we had gone on a road trip, lost the map
and ended up in a town inhabited by aliens. Overnight we had entered the strange
new world of disability where up until now, my only acquaintance with such a
place had been occasionally sneaking into a wheel chair allocated parking spot.

We had spent months agonising over whether to have a third child. We already
had two headstrong, capricious yet delightful daughters, and wondered what a
third child could bring. But the primal urge to reproduce eventually drowned
out the small, but insistent voice of reason at the back of my mind which banged
on about lack of money and time, and last October I became pregnant. Right from
the start there was something wrong. First, a low, nagging pain, and then a
blood test which revealed the levels of human Chorionic Gonadotrophin, the hormone
needed to sustain this pinprick of life, were rising at a snail’s pace. An ultrasound
at six weeks showed our baby, a tiny star in a vast black universe winking down
at us from the monitor. Next to her, a puddle of grey spilled across the screen
like the Milky Way. I was bleeding internally and was, as the medical jargon
puts it, about to "spontaneously abort".

I was devastated. Even at this early stage she was still my baby. I went home,
wrote her a letter and waited for the inevitable. It never happened. Instead,
a vague sickness crept over me, which grew stronger and stronger as the days
passed. An eight-week scan showed a healthy embryo with a strong heartbeat and
a 90 per cent plus chance of survival.

We decided not to have the 11-week tests for Down Syndrome. At that point,
we were just thankful she’d survived. Termination, with its jumbled spaghetti
of ethics and emotions, was not something we could contemplate. And of course,
we believed it would never happen to us. For a start, I was only 35, at the
crest of fertility’s slippery slope. I ate well, didn’t drink, didn’t smoke,
and was physically healthy. How naive I was! Now I know that 80 per cent of
babies with Downs are born to women under 35, who, perhaps like me, believe
the odds are strongly in their favour.

We did have the 18-week scan. The doctor who performed it raved about the new
technology which showed our baby pirouetting in the womb in glorious colour
3D. Conor thought she looked perfect, but when a close-up of her face loomed
large on the screen, I couldn’t help but exclaim, "Blimey she looks like Spud
from Bob the Builder."

The name stuck. From then on, my bump was known as Spud. We bought clothes
for Spud, made plans for Spud. In my fantasies I saw her with red hair cascading
down her back, long, delicate fingers running up and down the piano with an
effortless grace that I had never acquired in all my years of practice. My daughters
painted endless pictures of Spud. Spud on a horse. Spud going shopping. Spud
in her pram. And as the due date got nearer and nearer, they’d ask, "Will Spud
come out today?"

Spud needed a proper name. Her Irish father was determined it would be Gaelic
and we decided to call her Caoimhe (pronounced Keeva) which means grace.

On Tuesday, June 17, at five-o clock in the afternoon, in the middle of a clothes
shop in North Brighton, I went into labour, six days overdue. Not the gradual
escalation of pain, but sharp peaks erratically spaced. I went home and played
the piano, crashing out disharmonious chords which crescendoed with each contraction.
At 10pm, we headed for the hospital. In that drunken euphoric state of active
labour, I remember chanting: "Tuesday’s child is full of grace,".

At 11.45pm, my friend Annabel who was acting as birth attendant said: "If you
want this child to be born on a Tuesday, you’d better hurry up." Caoimhe emerged
eight minutes later.

She was beautiful. At seven pounds three ounces, she was smaller than my second
child, bigger than my first. There was nothing to suggest anything was wrong.
She wriggled and grimaced with all the vigour of a typical newborn who had been
rudely evicted. And when she opened her huge eyes I could see they were slate
blue, with the promise of hazel, like her sisters.

I held her to my breast but for some reason, she couldn’t suck. The next morning
I was still struggling to get her to feed. A midwife, whose face remains seared
on my brain, casually asked me if I’d had had any screening tests in pregnancy.
Puzzled, I asked her why she wanted to know, and she told me it was believed
my baby had Down syndrome.

Heavy words, so lightly spoken. It couldn’t possibly be true. I snatched up
Caoimhe and looked at her. How could I have not seen it? Her beautiful eyes
were indeed slanted, her tiny ears folded down at the tops. From that point
on, it was as if Spud had evaporated and a changeling placed in the crib. Whenever
I looked at this strange new baby, I could no longer see her beauty, just her
defects.

No one at the hospital really seemed to know what to do from that point. It
was left up to me to break the news to Conor. He’d taken our two daughters out
to celebrate with chocolate cake and babycinos, and came home to find my broken
message on the answering machine.

Naturally he was devastated. In some ways it was harder for him. While I could
allow myself the luxury of tears cocooned from the humdrum of everyday reality,
he struggled to be stoic for the sake of our two daughters.

The rest of the week passed in a blur. The public hospital was a busy, bustling
place but I felt suspended in time. Staff came and went, watering the roses,
collecting food trays, slipping in and out like shadows. My feelings of grief
and sadness, and overwhelming sense of isolation felt so out of place on a maternity
ward where happiness hangs like thick smog. On the second night, the mother
in the next bed held a party to celebrate the birth of her first child. As the
champagne corks popped, and the cameras flashed, I stifled sobs into my pillow
for the baby I hadn’t had.

Conor and I were left alone to deal with the fallout of our dreams. On reflection,
I find it ironic that couples agonising over whether to terminate a foetus with
Down syndrome are offered counselling by trained professionals, whereas we hardly
got as much as a cup of tea. There was a general awkwardness among the staff
when it came to talking about her diagnosis; or else it was ignored completely.

Maybe I came across as a person who was coping, whereas inwardly, I was flooded
with the strangest sensations. Grief, anger, disappointment, fear and an overwhelming
love for this tiny creature who was still my child, and who was struggling with
the very basic survival skill of sucking. Every minute was spent trying to get
her to feed, but her low muscle tone made it achingly difficult. I felt so helpless
after each attempt left us both angry and confused. Sitting with her on my lap,
stroking the muscles of her cheeks and throat in an attempt to stimulate a reflex,
there were fleeting moments when I hated her for being different. I felt impatient
with her for not being able to do something so basic, and terrified that this
was a pattern that was going to be recreated all her life. How old would she
be before she was toilet trained? Would she be able to read and write? Hold
a conversation? I wanted to know everything about Down syndrome, but I was too
terrified to find out. The nurses gave us a badly printed handout from the internet,
but the words ran off the page, and didn’t make sense anyhow. I managed to absorb
the fact that Caoimhe had standard Trisomy 21, which meant that in every cell
of her body lurked an extra chromosome ready to cause potential damage. I could
still manage a twisted smile to think of all the years I’ve militantly refused
to buy genetically modified food, yet I’d given birth to a genetically modified
child.

As the days passed, I continued to struggle with the breastfeeding, with little
support. I remember feeling incensed when one of the midwives called her lazy.
I knew nothing about Caoimhe’s condition, but I could see her gamely trying
to latch on and I could feel her frustration when each attempt failed.

There were blissful moments too. When the ward was quiet, Conor and our two
girls had gone home, and I could look down at her and she was just my beautiful
baby with perfect skin and big dark eyes. It was like the two of us were encased
in a safe warm bubble, but then thoughts of the future would barge into my mind
like a gatecrasher at a party and the moment would be lost.

I couldn’t equate this perfect child with my image of a person with Down syndrome.
I feel embarrassed now, 12 weeks down the track, with my ignorance. But I have
had very little contact with anyone with the condition, and my images were outdated.
Growing up in a small village in the north of England, there had been a home
for the mentally handicapped on the periphery and I’d seen them there. Badly
dressed, overweight men and women with pudding bowl haircuts, who talked funny.
People to be feared and avoided.

Nobody wants that for their child. I felt like the 13th fairy from Sleeping
Beauty had come along and cast a wicked spell. For Down syndrome strikes
at the heart of society’s two most valued attributes; looks and intelligence.
Needless to say, I was ashamed of such thoughts. I’d worked hard to bury my
prejudices and develop some sort of godless spirituality. Neither Hi Five nor
Barbies are encouraged in our house because I do not want my girls to grow up
obsessed with their appearance. But look at me now! Crying because my youngest
daughter may end up with a bull neck.

Four days passed in the hospital, with me struggling to contain my intense
and ambivalent feelings, not to mention the incessant thoughts which ricocheted
around my brain like boiling bubbles in a closed pan. On the fifth day she came
home and we attempted to reconstruct family life from the wreckage of our crashed
hopes. I remain eternally grateful to friends who rallied round with their quiches,
cooked dinners, and bottles of wine, who’d take our children on outings to give
us space to grieve, without expecting anything in return. Conor and I are both
private people who up till now have been crap at asking anyone for help, even
each other. We felt gauche and awkward in the face of such kindness; our vulnerability
made us cringe.

Slowly we began taking bigger forays into the world of Down syndrome, only
to beat a hasty retreat when we inevitably bit off more than we could chew.
We’d go to the local library and arm ourselves with books we were too afraid
to read. The higher incidence of disease and illness to which Caoimhe was prone,
read like a shopping catalogue. Heart problems, respiratory infection, leukemia,
epilepsy, blah blah. Like children watching a horror movie we’d peep through
latticed fingers at the black and white photos contained within the pages and
then cover our eyes. I could only go so far before casting the book aside in
favour of a Jilly Cooper blockbuster I’d also picked up to cushion the shock.
How lovely it was at the end of the day to run away to Larkshire, where all
the people were sleek and gorgeous and the only thing they cared about was humping
each other.

The problem was that the literature we found was woefully outdated. Reading
the bibliographies at the back of one book, with titles such as Bernard:
bringing up our mongol son and Johnny’s so bright, what a shame he’s
retarded, left us bleating with laughter whereas just a few months ago,
we’d be too politically correct to see the humour. Conor reckoned it was like
Irish jokes, only the Irish are allowed to tell them. Similarly it was OK for
us to laugh because we were now part of this world. Black humour, but then there
is no place where laughter is more needed than in the dark.

We lost count of the number of people who kept telling us that babies with
Down’s are "happy and loveable", which was like being offered a consolation
prize on school sports day. It annoyed me because I felt it denied Caoimhe the
chance to be seen as an individual with her own personality. I didn’t want her
to belong to a homogenous group of happy halfwits.

She is a jolly baby, but so were her sisters. In fact, if it wasn’t for the
obvious physical differences, there isn’t much to set her apart. So far, she
has reached all the expected milestones and slowly we are daring to dream.

When she started babbling - early too - I proudly joked about her being the
first person with Down syndrome to graduate from Monash. In Ireland a teenage
girl with Trisomy 21 was in the newspaper last week after scoring two As in
her Junior Cert (Year 10) exams. Perhaps we are only on the cusp of realising
what these people can do given the chance.

Still, the worry remains. There are so many questions we long to ask but are
too afraid of the answers. The nights are the worst, when life’s existential
questions rain down like a meteorite shower. Who will look after her when Conor
and I die? The natural order of life sees your child gradually unravel from
your apron strings till they are mature independent adults. People sigh about
their children growing up too fast, but I panicked at the thought of Caoimhe
being with us for good. I know there is sheltered housing for people with disabilities
which gives them semi-independence, but I imagine I’d never stop worrying if
she was OK.

Would I come to terms with the disappointment? Ours is a society that is used
to getting what it wants and while we can tolerate and accept people like Caoimhe,
nobody actually wants a child with a disability. Pre-natal screening and terminations
exist to relieve us of the fear of difference and the pain, heartache and responsibility,
which goes with it. Here, in the midst of a reproductive heatwave, the fertility
gods can design babies right down to their eye colour. Sperm sold on the internet
boasts of it’s owner’s high IQ. Perhaps mine are the misshapen memories of youth,
but as a child I saw more people with Down syndrome than I do today. I worry
that by the time Caoimhe emerges into adulthood children like her will be gone
forever.

Paradoxically, the future is brighter today for people with Down syndrome than
it’s ever been. The average life expectancy is 55 plus, and there is a whole
smorgasbord of experts out there who can help my child live as normally as possible.
At 10 weeks into life she is already hooked up with a physiotherapist and speech
pathologist. Chances are she’ll attend the same state school as her sisters.
I can’t help wonder what it would be like for her, though, to be the only child
in the class with Down syndrome. I worry she’ll be the butt of playground teasing.
Sometimes in my mind’s eye I see her as a teenager, boarding a bus and everyone
staring at her. I see her trying to buy an ice cream and being laughed at as
she struggles to count her money. I see her wanting to look like the pop diva
of the day, and crying because she never will. But these are piffling concerns
compared with others I have. They are too scary to voice.

Meanwhile, I throw myself into early intervention programs. With my other two
daughters, I took all their milestones for granted. They were both early movers
and shakers without much input from me. I thumbed my nose at the so-called educational
toys and left them to play with their imagination. Now I’m filling the house
with brightly coloured squishy rattles than ping and buzz and mobiles that play
canned lullabies. I read somewhere that listening to Baroque music can improve
the number of brain synapses, and Bach’s rhythmic, methodic counterpoints fill
the space between conversations in every room. Bach at breakfast, Bach at bathtime,
Bach at bedtime. Baching mad.

Sometimes I wonder if the therapy is about helping her, or me, by making her
more acceptable to a critical society and giving me something to focus on. I
had no say in constructing a child with her condition, but I can play a part
in how she develops. Yet in doing so, I sometimes wonder uneasily if I’m creating
a child who is too sophisticated for institutions, but still too vulnerable
for the real world.

I hope in time as her personality continues to emerge, I will get better at
separating the child from the condition. My two daughters can help me with this.
When the time was right, I told them as matter-of-factly as I could, that Caoimhe
had a condition called Down syndrome and would learn everything that they learnt,
but in a different way. The next week my eldest child stood up in front of her
class and told everyone about her little sister whom she accepts unconditionally.

Will my sadness ever leave? Probably not, I decided. It will continue to be
trammelled by a whole host of other feelings most of all joy. Time, that great
Band-Aid, will see emotions shake and settle like the flakes in a child’s snow
dome.

I guess that’s why I am writing this. To make sense of the senseless, to create
some order from the chaos in my head, so perhaps I can sleep at night. The days
are too busy to pay attention to the incessant thoughts, which form a continual
backdrop of interference. So far, Caoimhe’s life’s been a conveyor belt of tests
and appointments which provide reassurance, but leave little time for me to
get on with the job of mothering. It takes a plethora of professionals to raise
a child with a disability and I can’t help but feel at times that my nose has
been put out of joint, my role diluted.

Still, we’ve come along way in a short time. A lot of my initial fears remain
unfounded, as is so often the case. People ask if I wished I’d have discovered
her condition in pregnancy but the answer remains an emphatic no.

Fear permeates our perceptions, it is easy to be afraid of the unknown, to
create monsters where there are none to be found. From the very beginning, holding
her has been my strength. I can bury my nose in her neck and she will grab my
finger. In these moments, nothing else matters.

I’ve ceased to anticipate what people might think. I used to dread people’s
reactions, especially the elderly. I envisaged a weathered face peering in the
pram, buckling with shock, and a voice exclaiming, "Oh! a mongol!" But when
Conor wheeled her down to the local milk bar the old lady who runs it merely
smiled and said: "What beautiful eyes."

There are people who don’t know what to say, who stumble over comments about
her lack of hair, her tiny size. But there are plenty that admire her beauty,
who can see beyond the physical traits that go with Down syndrome, to find Conor’s
cheeks, my mouth, an expression of her sister’s.

I look at my baby, with her beautiful almond eyes, and her slow smile, which
starts at the top and spreads downwards so that her whole face beams. All my
fears are momentarily quashed, my prejudices melt away. She raises her hands
and waves her fingers with all the grace of a Balinese dancer. They are beautiful
fingers, long and tapered. Just right for playing the piano. We are back in
our bubble, Caoimhe and I, and life is good. The feelings that wrap around my
bones are blissful; they warm the very core of my existence. Beautiful girl,
we are so lucky to have you. I don’t know where she fits in society, but a family
is a world in microcosm. And I do know that right here, right now, she fits
perfectly within my arms.